Thursday, July 21, 2011

True Grit. And I ain't talking cowboys.

I think anyone who decides to write, whether in the murky blogosphere or wrapped in the prestige of the New Yorker has a fundamental decision to make before putting pen to paper. Or fingertip to keyboard. We ask ourselves, in my case repeatedly, just how honest we want to be. Honesty that has nothing to do with lies or embellishment. Are we going to share our lives, the good and the grit, or are we going to play it safe and write about things more outside ourselves? I could write a celebrity gossip blog that would put Perez Hilton out to pasture, doesn't mean I want to or should.

Being the type who prefers to hold my cards close to my chest, the thought of sharing (or even worse, oversharing) can feel like one looooong bungee jump. This, above all other reasons is responsible for the long gaps between posts. Trying to tow the line between being interesting with a dash of wit (I try people, I try) and telling you what I really think about can be exhausting. It can feel like work, and this isn't exactly paying the bills.

Despite all this, I'm going to start to write about some more serious stuff going on in our household these days. I think there is something for us both to gain by my doing so, but hell if I know what that is as I write today...

Many of you are aware that Sasha had major heart surgery when she was 4 days old. It was the kind of heart malformation that is rarely seen, and has a 90% fatality rate. I'm going to spare you the tears and tediousness of the details. Just know that Sasha showed what kind of stuff she was made of when at 4 days old and 4 lbs, she sailed through. Not a single infection, not a setback to be had. One month later she was home and I started to breathe again.

A year later she was diagnosed with mild aortic stenosis. Not a complete surprise considering this heart defect often accompanies Williams Syndrome. Years passed. I prayed, I bargained with God, I did Reiki on Sasha, and when check up after check up passed without it getting significantly worse, I thought we had escaped the grasp of another open heart surgery.

Skid...brick wall...slam. Wash...rinse...repeat...

Monday morning as I sat at my kitchen table I felt a wave of fear ripple through my body. What the fuck was that? Nothing had happened, all relationships and responsibilities were in check and at peace in that moment. It didn't make any sense. Then I remembered Sasha had her cardiology check up that afternoon and I just knew. I probably just lost some of you who are thinking I'm going for dramatic effect. I'm not. If you've known me for a long time, and you really "see me", you know that of which I speak. To all others, just go with it for now.

So when a few hours later the technician who was performing Sasha's echo said she had to step out for a moment, I should have been prepared. I wasn't. At least not really. To get through the day to day parenting of a child you worry about dying, you have to lock some facts and fear away. Push it down from our brains and into another part of our body. I know where my lock box is. It's tucked right under my throat and from time to time will press hard on my lungs to the point I can't suck in air. When Dr. Steinberg came in the room looking far more tanned than any cardiologist should, that lockbox bore the weight of ten boulders into my lungs. Breathing would have to wait awhile.

Sasha's stenosis, the pinching in of her aorta, has gotten much worse over the last 4 months and will require surgery very soon. Open heart surgery with a bypass machine. I HATE YOU BYPASS MACHINE. I mean, I love you for doing the work for Sasha's little heart while the surgeons will patch, stitch and sew. I hate you for making me worry you will not relinquish your job when it's time to give authority back to Sasha's pure heart.

So. This is where we are now. I want the summer to be over and I want Sasha to be at her 1st grade desk at Primrose school. I want this to be a distant memory that we will once in awhile talk about when we are brave enough to go back there. What I want most is to just go through the fucking surgery myself. Crack open my chest bone with your electric saw. Forgo the anesthesia if it sweetens the deal. Just leave the 6 year old alone. Please.

No?

OK, then let's play 'let's make a deal' once again. Let's raise the stakes for good measure. You let my daughter sail thru open heart surgery once more, and I will raise both of our children to have faith and love in God. I think you know I would have done so anyway, so how about this: Our family will perform service on a regular basis in our community. I once heard Sgt Shriver talk about this being a basic responsibility of all Americans and it stuck with me. I wish I could say we had been doing this all along, but time passes and what is not imperative slides off the bench.

3 comments:

What exactly does "peform service" mean? Service as in become deacons and perform religious services, or service as in community service, like cleaning up parks? I'm ok with the latter. I'm not sure if I could qualify as a deacon. But if it meant Sasha being ok, I'd appeal the Church's decision to the Pope himself.

A wee bit about me...

I am mom to a baby boy who looks like a linebacker, and a 6 year old girl who has Williams Syndrome and bakes a mean chocolate chip cookie. I am engaged to, domestic partners with, and will eventually get around to marrying my long term Man. He will be referred to as Z-Man on this blog as to not embarrass him to the rest of the world. He is a big tough ESU NYPD police detective- you know, the SWAT guys we see in movies. He also enjoys chick flicks WAY more than I do, and told me last night he wants to start a show called "Cop Chef"...good luck with that one honey :)